I was just diagnosed with Jak2/ET and had a bone marrow biopsy that ruled out other cancers . My levels are 450 to 510 now , but my Oncologist/Hemo acted like she wasn’t very familiar with this disease , so I’m getting another opinion from specialists in Blood disorders . I spoke with a specialist friend and she said there is nothing that I did at all to cause this . I just had a gene mutation (Jak2) that attacked my platelets and made them multiply . I had blood draws that ruled out infections , anemia, etc . Nope , I was just unlucky . They call this “The Old People’s Disease) and people from 60-80 get it . Well , I’m 69! . Haven’t started on HU yet , only 2 baby aspirin until I switch doctors or my platelets increase a lot more . So far though , a horrible headache , dizziness, mouth sores and fatigue. I was told only .01% of the population have this, but it seems like from this blog , that number is wrong 😑 .
ET is indeed very rare. You'll find so many of us here because this forum brings us together from all over the world.
For most of our primary care physicians, each of us will be the only ET patient in her or his career. So it's really hard to get the info we need, especially when the diagnosis leaves us in shock.
That's why it's great you've found this forum! Here is where your questions will be answered.
Alas, ET isn't just for our golden years. It occurs in young people too. I really like that you've been assured: There is NOTHING we do to cause ET. Nobody understands yet what sparks the mutations that drive ET.
To encourage you: HU will probably ease your ET symptoms (headaches, light-headedness, fatigue). It's true, your platelet count isn't extreme, but you might welcome the relief HU can bring.
I was just diagnosed with Jak2/ET and had a bone marrow biopsy that ruled out other cancers . My levels are 450 to 510 now , but my Oncologist/Hemo acted like she wasn’t very familiar with this disease , so I’m getting another opinion from specialists in Blood disorders . I spoke with a specialist friend and she said there is nothing that I did at all to cause this . I just had a gene mutation (Jak2) that attacked my platelets and made them multiply . I had blood draws that ruled out infections , anemia, etc . Nope , I was just unlucky . They call this “The Old People’s Disease) and people from 60-80 get it . Well , I’m 69! . Haven’t started on HU yet , only 2 baby aspirin until I switch doctors or my platelets increase a lot more . So far though , a horrible headache , dizziness, mouth sores and fatigue. I was told only .01% of the population have this, but it seems like from this blog , that number is wrong 😑 .
Wishing you all the best your story is quite similar to mine. When my doctor asked me what I did different in 2021 when my blood started going wonky the only thing I could think of was the Covid shot. I am on the hydroxyurea and so far not too many side effects. I cannot deal with however it is a chemo, and I hate the thought of having to take it for a long time. Best wishes.
I was just diagnosed with Jak2/ET and had a bone marrow biopsy that ruled out other cancers . My levels are 450 to 510 now , but my Oncologist/Hemo acted like she wasn’t very familiar with this disease , so I’m getting another opinion from specialists in Blood disorders . I spoke with a specialist friend and she said there is nothing that I did at all to cause this . I just had a gene mutation (Jak2) that attacked my platelets and made them multiply . I had blood draws that ruled out infections , anemia, etc . Nope , I was just unlucky . They call this “The Old People’s Disease) and people from 60-80 get it . Well , I’m 69! . Haven’t started on HU yet , only 2 baby aspirin until I switch doctors or my platelets increase a lot more . So far though , a horrible headache , dizziness, mouth sores and fatigue. I was told only .01% of the population have this, but it seems like from this blog , that number is wrong 😑 .
I've said it before, sure taking HU as chemo was scary, but having a stroke or heart attack is scarier in my opinion. I also take a baby aspirin to make platelets less sticky. So far, so good.
I thought so too at first, but my platelets have been climbing before 2021. It's genetic, or age. I popped my first pill today, with shaky hand. Believe me, this is hard to process.
Hi @debi342 Just checking in with you to see how things went yesterday with your first day of taking HU. I know the trepidation of taking a new med…flight or fight!
Now that the ominous first one is out of the way, hopefully you’ll feel a little more certain about the medication and the positive change it can make in your platelet level.
Do you feel you had any reaction to the HU such as being tired?
The headaches would subside immediately with no aftereffects so I knew it wasn't anything more than the HU. Prior to starting this medication, I was getting serious migraine headaches every two months like clockwork. I'd had migraines occasionally but they had pretty much stopped once I hit menopause 16 years ago. I was concerned about taking HU since it is a chemotherapy drug, but my platelets are in the 190s now (down from 792) and I am having no side effects. We all react differently and all medication has side effects that some of us will have and some of us won't. To me, the risk of side effects was preferred to the high risk of dying from a heart attack or stroke due to ET.
I learned I had ET at my annual Medicare checkup 2 years ago, my platelets were over 900,000. By the time I saw an oncologist 3 days later the count was over a million. They put me on 500 mg of Hydrea right away. Twelve months of weekly blood tests and varying doses of Hydrea later we have settled in on 4 days a week 1,000 mg Hydrea and 3 days a week 500 mg. Now a year after that my platelet count is down to 315,000, the lowest it’s ever been. I’ve had no obvious side effects or symptoms from the Hydrea or the ET and consider myself blessed for that. I stay active but am tired every day. It doesn’t keep me from doing things. It just takes longer.
My first oncologist told me everyone’s different, but if you’re like most people with ET when you die it won’t be because of ET*.
*as long as you take your Hydrea 😊
Can you tell me what OTC can be used for the itching and headaches? Tylenol and Benadryl okay with the 500 mg HU? I also take a statin and aspirin at night.
What's OK for me may not be OK for you. Please check with your own doctor to be safe!
That being said . . . a couple of days ago, an oncology physician's assistant approved my using topical lidocaine (creme, spray, patches) for pain. Applied to the back of my neck, lidocaine does help with headaches. It works through the skin, so it doesn't interact with medicines we've taken by mouth.
She also was OK with my taking a daily loratadine (Claritin) to ease my breathing.
The P.A. strongly recommended substituting acetaminophen (Tylenol) for the naproxen (Aleve) I've been using for serious pain. Why? Because Tylenol interferes less with the important work aspirin does on our blood.
She also said I should avoid taking a pain killer at the same time as HU or aspirin.
Our ET diagnosis means we can't be casual about the use of OTC products . . . . aren't we lucky?
"Afraid and mad" is where this weird, weird diagnosis leaves us.
Who even knew you could have too many platelets?
It's really scary. And unfortunately no one you know, probably not even your doctor, can help much.
Certainly there's suspicion that covid shots may be a factor.
But ET was identified more than 100 years ago. And people had it long before it was identified. There were no covid shots back then.
Sadly, no one yet knows what causes ET.
But others on this forum have lived with it for decades! It is NOT a death sentence.
It's also not a walk in the park. That's why taking HU (hydroxyurea) is important. For most of us, HU brings our platelet levels down.
This restores our energy and (some of the time!) relieves the terrible headaches ET can give us.
What will be your initial dosage? I hope you'll be started off with a low dose, then get careful monitoring (with blood draws) to see how HU is helping you.
Most of us like to take HU with food. We also find that drinking lots of water is good.
You have a million question, and this is where you'll find answers.
You're among friends, and we're all ET aliens together.
Can you tell me what OTC can be used for the itching and headaches? Tylenol and Benadryl okay with the 500 mg HU? I also take a statin and aspirin at night.
Me as well. Fortunately, I work from home four days so I can take care of whatever side effects. First pill today. I want to retire in three years, but life sure throws curve balls. I'm scared, but trying to look at this from a perspective that ET isn't life threatening, doesn't shorten life span, and this nasty drug keeps us from having complications. It's prophylactic. Keep posting how it's going and I will too. Good luck.
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Welcome to the ET club.
ET is indeed very rare. You'll find so many of us here because this forum brings us together from all over the world.
For most of our primary care physicians, each of us will be the only ET patient in her or his career. So it's really hard to get the info we need, especially when the diagnosis leaves us in shock.
That's why it's great you've found this forum! Here is where your questions will be answered.
Alas, ET isn't just for our golden years. It occurs in young people too. I really like that you've been assured: There is NOTHING we do to cause ET. Nobody understands yet what sparks the mutations that drive ET.
To encourage you: HU will probably ease your ET symptoms (headaches, light-headedness, fatigue). It's true, your platelet count isn't extreme, but you might welcome the relief HU can bring.
You're among friends here.
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16 ReactionsSo sorry. Hope you feel better soon.
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5 ReactionsI was just diagnosed with Jak2/ET and had a bone marrow biopsy that ruled out other cancers . My levels are 450 to 510 now , but my Oncologist/Hemo acted like she wasn’t very familiar with this disease , so I’m getting another opinion from specialists in Blood disorders . I spoke with a specialist friend and she said there is nothing that I did at all to cause this . I just had a gene mutation (Jak2) that attacked my platelets and made them multiply . I had blood draws that ruled out infections , anemia, etc . Nope , I was just unlucky . They call this “The Old People’s Disease) and people from 60-80 get it . Well , I’m 69! . Haven’t started on HU yet , only 2 baby aspirin until I switch doctors or my platelets increase a lot more . So far though , a horrible headache , dizziness, mouth sores and fatigue. I was told only .01% of the population have this, but it seems like from this blog , that number is wrong 😑 .
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Helpful -
Hug
11 ReactionsI've said it before, sure taking HU as chemo was scary, but having a stroke or heart attack is scarier in my opinion. I also take a baby aspirin to make platelets less sticky. So far, so good.
-
Like -
Helpful -
Hug
6 ReactionsHi @debi342 Just checking in with you to see how things went yesterday with your first day of taking HU. I know the trepidation of taking a new med…flight or fight!
Now that the ominous first one is out of the way, hopefully you’ll feel a little more certain about the medication and the positive change it can make in your platelet level.
Do you feel you had any reaction to the HU such as being tired?
-
Like -
Helpful -
Hug
5 ReactionsThe headaches would subside immediately with no aftereffects so I knew it wasn't anything more than the HU. Prior to starting this medication, I was getting serious migraine headaches every two months like clockwork. I'd had migraines occasionally but they had pretty much stopped once I hit menopause 16 years ago. I was concerned about taking HU since it is a chemotherapy drug, but my platelets are in the 190s now (down from 792) and I am having no side effects. We all react differently and all medication has side effects that some of us will have and some of us won't. To me, the risk of side effects was preferred to the high risk of dying from a heart attack or stroke due to ET.
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Hug
10 Reactions“This won’t be the thing that kills you” was one of the first things my doctor said after my diagnosis.
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9 ReactionsWhat's OK for me may not be OK for you. Please check with your own doctor to be safe!
That being said . . . a couple of days ago, an oncology physician's assistant approved my using topical lidocaine (creme, spray, patches) for pain. Applied to the back of my neck, lidocaine does help with headaches. It works through the skin, so it doesn't interact with medicines we've taken by mouth.
She also was OK with my taking a daily loratadine (Claritin) to ease my breathing.
The P.A. strongly recommended substituting acetaminophen (Tylenol) for the naproxen (Aleve) I've been using for serious pain. Why? Because Tylenol interferes less with the important work aspirin does on our blood.
She also said I should avoid taking a pain killer at the same time as HU or aspirin.
Our ET diagnosis means we can't be casual about the use of OTC products . . . . aren't we lucky?
Hoping you'll quickly learn what safe for YOU.
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Helpful -
Hug
7 ReactionsCan you tell me what OTC can be used for the itching and headaches? Tylenol and Benadryl okay with the 500 mg HU? I also take a statin and aspirin at night.
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Helpful -
Hug
3 ReactionsMe as well. Fortunately, I work from home four days so I can take care of whatever side effects. First pill today. I want to retire in three years, but life sure throws curve balls. I'm scared, but trying to look at this from a perspective that ET isn't life threatening, doesn't shorten life span, and this nasty drug keeps us from having complications. It's prophylactic. Keep posting how it's going and I will too. Good luck.
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Like -
Helpful -
Hug
7 Reactions